Wednesday, December 14, 2011

Diagnosis: 8 Years Later

It was eight years ago this week. Yes, eight years ago I walked into the building I now work at, but I wasn't walking in as the Community Education Specialist, but rather as a deeply confused 20 year old. What was this place? Why was my dad bringing me here? What is this thing called autism?

While I may have been confused my dad was looking for answers. After reading an article in Parade magazine about Asperger Syndrome he connected the dots and was now looking for confirmation. Myself? I was confused and a bit annoyed that I was awake before 10AM.

The assessment took place, the report was written, and my doctor confirmed it. It was Asperger's. Essentially, the doctor gave me the diagnosis and said, "good luck." If I was confused before getting the assessment I was now fully confused. I didn't know what I had or what it meant. As I say in my presentations, and have said on here several times, I went onto the internet to see what it meant. Remember, this was 2003 and autism awareness wasn't. Back then unless you were a part of the spectrum there was no knowledge of autism except the once a year thing about someone on 20/20 and the movie Rain Man. That was it, so I looked it up and read the line of, "People on the autism spectrum can expect to not have a job, won't have friends, and will not be happy."

I was devastated. In my confusion I believed every word of that web page. My life, as I knew it, came to a crashing halt. Over the next year I didn't care about anyone or anything. It wasn't until I accidentally discovered I had the gift of expressing myself through writing that I began to question those words on that website. While I'm eternally grateful I did discover it, I also feel as if I lost 15 months of my life.

Now, why is this relevant now? I've said this story many times, but there have been many stories I've heard in the past two weeks of other people getting diagnosed as well as many parents asking me, "When is the right time to let my kid know they have Asperger Syndrome?"

First, and most obviously, we want to try and avoid the introduction I got to it. Secondly, I don't know the "right" time but I want to describe what it was like for me growing up. As far back as kindergarten I knew something was up, but I didn't think anything was different with me as surely it was everyone else. My "Kansas" (see my glossary if you are new to my blog located on the upper portion of the side bar on right) was weather and I could talk for hours on end about it. Anytime bad weather moved into the area I became hyper-sensitive and was sure a tornado was going to drop down on us and kill us all. My classmates? A lot of them didn't know what a tornado was, and they didn't care. On top of that they didn't know what the jet stream was, the gulf moisture, or anything else weather related. Also, I was a very frightened child as I was constantly fretting about the threat of a nuclear war with the Soviet Union. My classmates? They couldn't place the Soviets on the map. Because of my classmates lack of knowledge on this topic I instantly discredited their intelligence. Granted, I now know that in the end I was no smarter than they were, but it was just that our interests varied. Back then though I looked at my classmates and sort of looked down on them because obviously I was the smartest kid in the world and there wasn't anything wrong with me, but everything was wrong with them.

I kept that mentality most of the way through school. I let my classmates know every rule they broke and I was the little class sheriff. I was oblivious to the fact that no one likes a tattle because, in my mind, rules were meant to be followed and since I follow the rules everyone else should. Bullying wasn't as big of an issue back then and I wasn't bullied in any way, but on the same hand no one went out of their way to talk to me; perhaps in fear of saying something that would cause me to report it to the teacher.

Those were my younger years and I know the question of, "When do I tell my child" hasn't been answered yet. One answer I can give on that is that, "If you've met one person with autism you've only met one person with autism." Each person is going to react differently. I've heard some parents say that their child takes it as a badge of honor and that they are unique and they love it. Others may not know what it means at all, and some others may use it to their advantage. Regardless of how they take it I feel it is important, at the right time, to let them know because I knew something was different, but I thought it was with everyone else which also lessened my desire to talk to everyone else.

This is something that will have to be discussed at some point in time and I feel it is better to do it in a parent controlled environment than the way I found out. On top of that, once I began to forget that awful web page with those hideous words, I felt relieved about my diagnosis. I now knew that my social problems weren't the fault of others, but it was because I have this thing called Asberger Syndrome. Slowly the self-hatred lifted from me because the reason why I couldn't make friends, or make eye contact, wasn't because I was weak as I thought it was for some time.

So when is the right time? The right time is when the parents decide it is. Each person is different, each person is going to react differently, and each set of parents are going to handle it differently. I feel the Asperger diagnosis needs to be looked at differently though as take a look at how many revolutionary minds were or were suspected of being on the spectrum. Within the minds of those on the spectrum there is so much potential and that's why knowing earlier is better. The more the child and the parents understand who they are and what they have, hopefully, the smoother the growing up process will be.

It's been eight years and my passion in life is now autism awareness and understanding. I want today's message to be this, "It's okay to be on the spectrum. It's not the end of the world." I thought it was the end of my world when I was diagnosed because my introduction to it was all wrong. Parents, if you have the discussion you can control the information. True hope comes through understanding and we on the spectrum are very sharp people. We will notice that there is a difference with us whether you tell us or not. If we know the real reason then we can start learning the ways of the world. And when the news is told the right way we can avoid what I went through. That's my passion. No one should go through the same 15 months I did. It doesn't have to be that way.


  1. Hi, Aaron! I'm from Brazil and it's my first time in your blog. I'm behavior psychologist and I have been working with children on spectrum. I'm very excited to know your blog and I hope I could keep learning with you. Thanks for the opportunity (and I'm sorry about my english, I'm still learning).
    Lygia Dorigon

  2. Stages of grief is what a lot of individuals with autism will go through when they first learned of their diagnoses and they have no history of other diagnosis. Accepting to be a differently able person is tough! So, being depressed is par for the course. HOWEVER, how each person getting out of this is different. Those who have strong support systems tend to bounce back faster than those who don't. Those who are keenly aware of their mental health tend to realize their well being issues sooner than those who don't. Lastly, those who proactively seek help will have a better chance to have a better prognosis than those who don't (if the degree of symptoms are about equal).